if only i knew what i was doing…

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Monthly Archives: November 2015

I keep realising that the spaces between me writing and posting and me not writing and posting are getting longer and longer. If I’m honest, it’s because I haven’t had any good news lately, and hate being the bearer of bad. And also, I have no idea who in my actual social circle reads this thing and there are some things that I guess are too personal to put on here, too private for work colleagues, or people I only know in passing. Strangers, I’m completely fine with, for some reason. I’ll tell them anything. It’s fine. I don’t know why.

I’m writing this on an iPad I bought three, maybe four weeks ago. Years and years of resistance, and one day I just realised I wanted one. Or could do with one. Maybe something to do with not being able to carry my old laptop anymore and still wanting to be able to write. I thought I would be doing Nanowrimo again this year. This would have come in handy I suppose. But no. I decided I needed my time more than 50,000 words this year. Last year I thought I was pushing it, but this year, my time is definitely more valuable to me.

I spend a lot of my time now in denial. Or, not really denial as such, just not thinking about my situation at all. If I’m sitting down, I feel normal. I’m not in a huge amount of pain yet. I say ‘yet’ because I’m expecting to be in a huge amount of pain at some point, maybe some point soon. The mets to my liver aren’t in retreat anymore since finishing the Rotterdam so I know I will need to deal with this at some point.

I mentioned that the hardest part about all of this lately was the feeling that I was losing my independence. Well, that has shot up by about a million levels over the summer. Winter has definitely come. I suffered from DVT in August and my legs haven’t recovered. It may be lymphodema brought on by the DVT, but my legs are useless. I can get upstairs with a struggle, but to leave the house I need a wheelchair or motor transport. I have to ask to be pushed around. I can’t go out shopping or to do any of the things I used to just take for granted. I can’t even get to my own doctors surgery on my own because the NHS provided wheelchair doesn’t have the big wheels on the side for me to propel myself. There have been times when it’s been mortifying. People not used to pushing someone around in a wheelchair don’t understand that just stopping and leaving the person in the aisle of a shop is unacceptable. Or leaving them sitting next to a bin. Or in the rain while they stand under the shelter. Or the road while they wait at a crossing. I hate it. Of everything going on at the moment, it is something I really really hate. But I suppose it’s just something else I need to get used to.

As usual I’m still trying to get more treatment. I’ll have to go to London for a consultation with a private oncoloogist to get anything more now. I’ve already mentioned the COC trial, but I think I may need sterner stuff. I’m getting my hair cut tomorrow just so I can call fate’s bluff and have someone offer me somethng that will make it all fall out again. That’s what happened last time, so definitely worth another go. Also, I’m tired of looking like a hobo without my hat on, and of wearing wigs to cover the mess that this regrowth has become.

And then I’m spending the rest of the day trying to fill out the pile of forms I urgently need to fill in. I’m rubbish at this these days, I’m lucky if I can get my name right. I’ve got to fill in forms so I can try HBOT – Hyperbaric Oxygen Therapy. The extra oxygen is supposed to give the cancer cells a hard time. And I have forms to fill in for the DWP that I can hardly get my head around, I’ve asked for extra help with those though, I’m not a fan of the DWP tricksters.

I had a good birthday earlier this month. Hooray! One good thing to report!